Welcome, and thank you for reading again. In this latest blog I’ll mention issues which are loosely connected (at least in my mind), namely the Obama administration and the increasing relevance of stem cell research.
Firstly and unashamedly I’m a fan of Barack Obama. Because I live in Australia however I do not need to immerse myself in US domestic politics, as it doesn’t directly impact on me. In that regard I shall strive to keep this site free of partisan political issues. What does impact directly on me however are scientific developments and potential developments which augur well for the treatment of, and recovery from, MS. And this is where, for me, the election of Barack Obama becomes interesting.
You might recall earlier this year the big news item was that the Obama parents bought a puppy for the girls. I say “big news item” seriously because the at-times-flippancy of the media elevates small stories into big ones. While that may have been the case here, I feel without any cynicism that the world needs lightweight harmless good news stories now and again. Otherwise we tend to forget our collective humanity – and two innocent kids getting a puppy, at arguably the most important residential address in the world, is both a heart-warming story and by the public’s appetite a big one. The relevance of this however to MS is more subtle. Michelle Obama was raised in Chicago and was very close to her father, who by all accounts was loving, aspirational, and worked hard in the interest of his kids having a better life than he did. His nickname “(Bo) Diddley” is where the puppy Bo derives its name from – and, according to my newspaper, Fraser Robinson “worked shifts at the city water plant despite the multiple sclerosis which was crippling him”. Michelle Obama then, as a consequence, brought to the White House an acute appreciation of life with MS.
Eight months later in July this year it was announced that medical researchers around the world would have access to US funds for embryonic stem cell research. This was an Obama initiative overturning a presidential ban by George Bush on funding some 8 years earlier. Proponents of the research grants were ecstatic, believing embryonic stem cells are at the cutting edge of regenerative medicine and are likely to be proven beneficial for mainstream treatment of debilitating diseases such as MS, diabetes, Parkinson’s disease and Alzheimer’s. I have in that regard read the two books written by the actor Michael J Fox about his illness and from that reading appreciate how hard he lobbied for such research, and how pleased he was with the Obama decision on funding.
I share such pleasure and optimism, and believe the era we live in will bring important medical advances – and the speed at which that will happen might well be breathtaking. As an example, and overlapping with embryonic stem cell research we have wider new stem cell developments generally – such as the field of induced pluripotency where patient’s cells can be reprogrammed into embryonic stem cells.
My training is as a lawyer, not a scientist or ethicist. I can only observe these developments from the sideline – from there however I see developments such as that which occurred last week, where a 19 year old youth in Australia at death’s door had his MS symptoms reversed and made a recovery, after receiving modified stem cells, which could only be described as spectacular. I see in that article that the risk of death has reduced in recent times from 8% to 1%, and there is a 60 to 80% chance downward progress can be halted. I also noted, after I set up my own blog site, that there is a very good blog by another “Ken” … Ken’s MS Blog by a Canadian gentleman which covers his stem cell treatment in China. He has also posted a YouTube video on his experience. And incidentally I know a woman who is currently visiting Cologne Germany having stem cell treatment. I wish her my very best wishes, and hope when I see her in the new year she’ll be able to beat me hands-down in our walking-stick races down the corridor.
All of this research is good news, and augurs well for the future in relation to scientific intervention to improve MS. It is particularly optimistic news for people with advanced, highly debilitating MS. If you have read my blogs to date, you will know that I am also an adherent to the MS diet advocated (and in my view proven) by medical practitioners such as Professor George Jelinek in Australia and the late great Dr Roy Swank in Oregon – coupled with the therapies of meditation/ regular exercise/ physiotherapy/ and yoga. I do not believe in “fighting” MS, either fighting per se or by tackling MS by any one discipline alone (such as science), but rather feel that a multi-pronged approach to treatment is the best – and I believe these therapies are fundamental to such an approach.
I intend to write a comment on stem cells asap, in the meantime here’s the good news story which was on the airwaves here today.
Greetings all, and welcome to the second of my blogs.
As I indicated in the previous post, when diagnosed last year as emphatically having MS it ended for me a 17 year stretch of misdiagnoses. I bear no animosity to the medical profession for that, as the conditions I presented with, to various doctors’ surgeries, over those years included conditions which mimicked MS – ciguatera (fish) poisoning was one, and chronic fatigue was another. The diagnosis of MS therefore, when it came, fell somewhere between an “aha” moment and a relief – and retrospectively explained a lot. Armed with a definitive diagnosis (and a culprit) I then undertook systematic and detailed research, as indeed I felt my life was riding on it, and I quickly realised I was serendipitously fortunate in that a lot had been written and published in that 17 year period on the role of diet (and good oils) in slowing the progress of the disease and in the replenishment of the myelin sheath.
I found in particular that Roy Swank in the USA and George Jelinek in Australia wrote in praise of Flaxseed oil and the long-chain Omega-3 fatty acids and their highly therapeutic effects in treating MS, and I found that Judy Graham in the UK had additionally written about the efficacy of Evening Primrose Oil in her various books including one named “Evening Primrose Oil “ and the excellent “Multiple Sclerosis: A Self-Help Guide to Its Management”
It was against this background that I had a brain snap recently and thought “hmm, the Lorenzo story involved oil”, and I wondered if it also involved diet. So I did a Google search and found that it did. I still haven’t (mea culpa) as yet read the book or seen the “Lorenzo’s Oil” movie, but the story in my opinion is further compelling evidence of the connection between good oils (and diet) and a profoundly positive effect on the management of neurological and/or autoimmune conditions. Lorenzo Odone, the young man in question, had Adrenoleukodystrophy (ALD), a genetic demyelinating disease … and in that regard – the erosion of myelin – there are strong parallels with MS, which is by far the most prevalent acquired demyelinating disease (but, humbly I add, not the worst). I’ve pulled up a number of “Lorenzo” sites … and the following are an indicative bunch. Note that Lorenzo’s parents (his mother has since died) set up the “myelin project” in his honour. Their website www.myelin.org gives a good overview of the aims of the project and demyelinating diseases generally. Some Lorenzo articles you might find worth reading are located at: BioEd Online, About.com: Rare Diseases and a recipe which includes a comment on MS is located here.
My blog however is not about Lorenzo’s oil, but rather is about the therapeutic effects of “good” oils on MS. If you’re interested I’d recommend you look at links on this webpage to George Jelinek and to Judy Graham for a discussion of oils. For my own part I take Evening Primrose Oil, Omega-3 fish oil and Flaxseed Oil on a daily basis … and subscribe to the view that they are very appropriately called the “essential” oils.
Finally I also raised the point above of “diet”. Lorenzo’s parents combined his oil intake with a low saturated fat diet. I cannot stress enough the importance of such a low fat diet (for MS and the replacement of myelin), and will be writing on this in subsequent blogs.
In the meantime, best wishes and thanks for reading
*Incidentally the movie Lorenzo’s Oil (starring Nick Nolte and Susan Sarandon) was directed by Australian filmmaker George Miller (Babe, Happy Feet, Mad Max etc), who grew up in a country town not far from where I was raised. His interesting biography is worth reading. George and his twin brother John are physicians … and I suspect he was drawn to the Lorenzo’s Oil story as it combined his twin loves of medicine and cinema.
Hi … my name’s Ken Bull and I live in subtropical Australia. I have MS, diagnosed last year but according to the neurologist I’ve had it much longer (17yrs in fact, when I was wrongly diagnosed with ciguatera fish poisoning*). I’m an active researcher – it’s a passion of mine, and I have post-graduate qualifications in research – and I enjoy writing. I’m a lawyer by qualification, but an artist by interest – in ceramic sculpture and portrait painting. But more importantly I think I can help you with MS, which is the intention of this regular blog site. So, thank you for reading and welcome to installment number 1 of www.kensmsrecovery.com.
For some time I have been emailing my thoughts and accumulated research to a group of people I met when I attended a 5 day retreat run by Professor George Jelinek and Dr Ian Gawler at the Gawler Foundation in scenic bushland Victoria, about 1.5 hours drive outside Melbourne, Australia. Ian Gawler is Oz’s most pre-eminent and prominent cancer survivor (who’s cancer-free 30yrs after being given 3 months to live), and the foundation he set up is supported by some of our biggest corporate and philanthropic institutions. It flourishes as a cancer-survival and related lifestyle centre, but twice a year runs an excellent retreat on MS. The time I attended there were several people who’d traveled down under from the UK, USA and mainland Europe … which is testimony to how well regarded on the world stage Gawler retreats are in “taking control” of MS. Certainly for me it was life-changing … in that fears I went there with were diminished with knowledge – reminding of the old adages firstly that “knowledge is power” and secondly that “sunlight is the best disinfectant” (the sunlight in this case being knowledge of how to take control of, rather than to figuratively battle, MS … with a little double entendre on vitamin D).
I thought however I’d take my research and knowledge to a wider audience by doing a blog – and by doing so I hope to be able to provide you the reader with some useful information on MS. Please understand I’m not medically trained – that’s not my skill set – but by pointing you to research and developments, and giving some details of what I have learned on my journey with MS, I hope I might assist you to gain knowledge on how to arrest the irreversible slide of this condition.
As we know there are 2 big ticket items on MS – firstly it’s incurable and secondly it’s considered progressive (tho’ the latter might depend on your definition of “progressive”) . From what I’ve learned however, and from what I believe, it is incurable at the moment and, very importantly, I believe that its progressive descent can be held at bay by diet, exercise and lifestyle. In my forthcoming short blogs I intend to point you to research from various websites which detail steps towards making MS curable in the hopefully-near future, and to information I’ve either found or had shown to me which convinces me that the downward progression of the condition can be halted.
I have found a number of sites which I hope you might find interesting, and to which I’ll point you if you were to read my blogs. For the moment however I’ll leave you with the following:
- firstly George Jelinek’s excellent website www.takingcontrolofmultiplesclerosis.org (Professor Jelinek being one of the co-presenters of the MS retreat I mentioned above … note that George, a medical academic, has MS and his mother had MS);
- secondly a website on how the brain’s ability to repair the myelin sheath possibly holds the key to why there are stable interludes in Relapsing Remitting MS, and how that gives hope generally – http://www.sciencedaily.com/releases/2009/07/090701102908.htm;
- and thirdly one of the many (many!) practical youtube video clips by LA-based UK comedian Jacalynn Flax, who has had MS for 30 years. This one deals with leg lifts and foot exercises: http://www.youtube.com/watch?v=YAaSDkFQBZ0&feature=related.
And I guess that will do for my first foray into blogland! I hope you enjoyed reading, and if you were inclined to travel I’d strongly recommend the MS retreats run by the Gawler Foundation in Australia (www.gawler.org).
Best wishes, and I hope you wish to keep reading my blog
*as for ciguatera, I see that Wikipedia states it is often misdiagnosed as MS (http://en.wikipedia.org/wiki/Ciguatera#Symptoms). I had the reverse situation and, being philosophical, in many way I’m glad that was the case – because in 1992 Dr Roy Swank had not published his groundbreaking research in Lancet, and those who have built on his work so well (such as George Jelinek who I have mentioned above) had not themselves been diagnosed with MS nor commenced their journey to help others.